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Delhi

IMSD STANDEES : AWARENESS BLITZ

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 AWARENESS BLITZ AT HOSPITALS ACROSS DELHI/ NCR

An Awareness campaign under the theme #knowMultiplesclerosis with MSSI Info Standees was launched by MSSI Delhi for the IMSD week starting 1st February 2020.

Standees with the IMSD logo and a few lines on What is MS (in English & Hindi), along with contact details of the Delhi Chapter were placed in prominent locations at 12 leading Hospitals across Delhi NCR . These are as follows:

  1. The Annual Delhi Neurological Association Conference Ambedkar Hall, New Delhi from 30 Jan onwards. It was expected that up to 1000 people would attend this conference over a period of 2 days
  2. GB PANT HOSPITAL OPD RECEPTION
  3. PUSHPAWATI SINGHANIA HOSPITAL
  4. VIMHANS HOSPITAL INDIAN SPINAL INJURIES CENTRE
  5. GANGA RAM HOSPITAL
  6. IBS (INDIAN BRAIN & SPINE ) HOSPITAL
  7. MAX HOSPITAL PATPARGANJ
  8. MAX HOSPITAL VAISHALI, Ghaziabad
  9. VIMHANS, ISIC
  10. ARTEMIS Hospital ( Permanent placement)
  11. MEDANTA Hospital Gurgaon ( LED Screen )
  12. APOLLO Hospital

We have got 4 new enrolments in the month of February.

As part of INDIA MS DAY 2020, Delhi Chapter organized a Health Check Up camp at Indian Spinal Injuries Centre Hospital, Vasant Kunj on Thursday 6th February 2020 between 12 Noon – 5 pm. This was for all PwMS and their caregivers at the end of a long & bitter winter!

The programme included exclusive one on one free consultations with related to medicines, treatments, management of MS in daily life with the following specialists,  Neuro-physicians, Urologist & Internal Medicine on issues of general health, MS / neurological issues, pain management, urine /stool problems etc.

Patients started trickling in from 11.45 AM onward. By 1:30  PM almost all the PwMS attending had registered.

All the MS patients consulted the neurologist & urologists. Based on their requirement, some were referred to the other specialists as well.

100 packed boxes of Lunch / Refreshments were arranged for MS Persons & the caregiver. A conscious effort was made to help out MS families wherever possible, therefore the lunch box was prepared by the family of a PwMS (Ms. Richa Bhambri )- the packed professionally home-style meal was enjoyed by all and shared with the staff of ISIC as well. .

The programme was attended by 28 PwMS accompanied by their caregivers, volunteers, EC Members & staff.

We were approached by several visitors to the Hospital, and pamphlets & information was distributed. We also identified one new MSPerson who is now getting registered with the Delhi Chapter.

GRATITUDE TO Volunteers Ms Ameeta Gupta, & thanks EC Members Milly Murgai & Pinky Hora for conducting the registrations in a systematic & efficient fashion.

INDIA MS PERSON OF THE YEAR 2019

By Delhi, General No Comments

INDIA MS PERSON OF THE YEAR! 2019 Group Captain Prabal Malaker

A retired Indian Airforce Test Pilot who has flown almost every aircraft in the Air Force inventory in his time from MIGs’, Jaguars’, and Mirages’, to large transport carriers like the Avro and AN-32. He is a qualified flying instructor, who has imparted training to several young pilots.

His message to fellow MS persons is very straight forward, “If you have a problem, accept it. Work within those challenges and carry on with life. Keep your mind strong and paths will open up”, says a 63-year-old Multiple Sclerosis (MS) person, who has never learned to give up against all odds.

Life seemed to be going well until August 1998, when he was diagnosed with the progressive form of Multiple Sclerosis. He had a near-death experience when his plane, upon landing caught fire. Neurologists said that this could have possibly triggered off an autoimmune response to cause MS. In 1999, he was permanently downgraded from flying and his career came to a standstill. He had to retire from active service at the young old age of 52 years!

This was the time when he was introduced to MSSI Delhi by none other than Mrs. Sheela Chitnis, Co-founder of MSSI, by his sister Gopa who was living in Mumbai at that time. He joined the Delhi office as a volunteer to serve many other people like him. He has been in a leadership role and together with a team of some very dynamic volunteers who work shoulder to shoulder to improve the lives of people living with MS. He has been instrumental in setting up systems and procedures for smooth execution of projects, services, and initiatives that are offered to registered members of the society within Delhi NCR.

Prabal is a foody and a movie buff, however, going to movie halls and restaurants in a wheelchair was becoming a challenge since most of these places were not handicap friendly. He decided instead of getting stuck in the house and giving up all the things he enjoyed he would embark on a single point mission; To bring about change in movie halls and restaurants so that a wheelchair user could enjoy barrier-free access. Due to his single-handed and persistent effort, the Disability Commissioner has served notice to Movie Hall Operators which includes PVR, INOX, and Cinepolis A notice has also been served to 480 restaurants and the hotel of Delhi State to conform to the harmonized guidelines of barrier-free access for PwD.

Being an avid traveller, he has conducted accessibility audits for hotels and tourist sites in Jodhpur, Udaipur, Ranakpur, Sarnath, Varanasi and Sri Lanka for a Cox & Kings Accessible Holiday segment called Enable Travel.

He heads the advocacy arm of the MSSI Delhi chapter and has been engaging with the Delhi State Disability Commissioner on a regular basis to bring about change in policy and assessment guidelines for disability and advocates for the right of people with Multiple Sclerosis.

We wish him good luck and good health always!

International Day of Persons with Disabilities

By Delhi, General No Comments

International Day of Persons with Disabilities is an international observance promoted by the United Nations since 1992. It has been observed with varying degrees of success around the planet. The observance of the Day aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. It also seeks to increase awareness of gains to be derived from the integration of persons with disabilities in every aspect of life. Each year the day focuses on a different issue. This years theme is, “The Future is Accessible”.

As a part of the national advocacy action plan we had identified the need to address the poor understanding of MS among external stakeholders, disability groups, government, media, and the general public. MSSI members, volunteers and persons with MS along with their caregivers participated in the Symbolic Walk to Freedom that started from the iconic India Gate in the capital city of New Delhi to commemorate the International Day of Persons with Disabilities. This event was organized by NCPEDP and the America India Foundation. Before the walk, MSSI’s India MS Person of the year, 2019 Gp. Capt. Malaker, along with members of other newly recognized disabilities were invited on the dias to release the blue and yellow balloon as a symbol of freedom from the bondage which is social, psychological, societal and individual. There was a gathering of nearly 5000 people and we were able to create a lot of visibility and awareness about Multiple Sclerosis. We gave away pamphlets with information about MS & MSSI. As a way to create awareness, we displayed placards with slogans that convey the need of the hour for Multiple Sclerosis which included Know Multiple Sclerosis, Change assessment guidelines, No Data on Multiple Sclerosis, No research, Reduce cost of Treatment.

Ironically even though the theme is Future is Accessible, that is not the reality on the ground for a person living with MS in India because they are still struggling with inappropriate assessment guidelines, lack of data of prevalence of MS in India, no research on drugs and treatment that might work. All of this leads to lack of access to schemes, social benefits, insurance and employment. We have a lot to do to change that.

Participating at national level events provided impetus to our work in the area of advocating for the rights of persons with MS.

OzHaat – An NGO Mela

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On Saturday 30 November, MSSI Delhi participated in the inter 19th edition of OzHaat – an NGO Mela organized by the Australian High Commission.

MSSI Delhi has been associated with this event since its inception, and we use this wonderful opportunity to provide a platform to our MS members and their families to showcase their talents and entrepreneurship by displaying and selling various things made or sourced by them.

Over the years MSSI members have sold a variety of goods ranging from hand-knitted sweaters, embroidery items, pickles, and artisanal chocolates to hand-painted cards, bags, shoes, and shawls.

The entire proceeds from the sales go to the individuals participating with MSSI Delhi under its “ Swayam” project which acts as a facilitator, helping them to get an opportunity to not only earn but also give the participants a feeling of pride that enhances their self worth in the eyes of their friends and family.

It is our effort to give between 4-5 PwMs this chance every year.

International Networking Meetings Athens – Oct 2019

By Delhi, General No Comments

Introduction: MS International Federation conducts various meetings that are attended by their Member organizations.  These meetings include World Conference, International Networking meeting which is held once a year and is hosted by one member country or the other.  In addition to this, they either have other meetings with smaller groups or allocate slots within the 2 above-mentioned meeting for various working group & committees, which again member organizations can attend in person or digitally. While some of MS societies can afford to pay for their travel and stay, others need to raise the money/funds to do so like MSSI has been doing.

There were about 90 volunteers, staff and people with and affected by MS from 34 countries across the global MSIF movement attending the MSIF International Networking meeting held in Athens Greece from September 13 to 16 2019 conference.

This time in addition to Mr Viresh Oberai (President) and myself we were able to secure sponsorship from MSIF for Mrs. Mama Gupta (Member representing India on International Resource Alliance). Though MSIF had agreed to support Anjali Vyas who was also assisting us in the translation of the MSIF animation videos Unfortunately due to a health emergency she was advised by her doctor not to fly hence could not attend.

We are very thankful to MSIF and the Greek MS Society for their wonderful arrangements and warm welcome extended to us

Highlights of the meeting were 

People with MS Forum: well-being and quality of life

Every two years people with and affected by MS gather to give direct input into the work of the movement. This year, the Forum focussed on well-being and quality of life with MS. Participants contributed to the well-being element of the Progressive MS Alliance’s research strategy and discussed programmes to reduce social isolation among people with MS and family caregivers. This was stimulated by an excellent presentation on the topic by EME, Spain.

The Forum participants also provided guidance on content, audience and format for an information resource on ageing with MS, which will be further developed by MSIF’s International Resource Group, for publication in 2020.

Mamta Gupta who started off with helping me on the International resource alliance has now seamlessly transitioned into being an integral part of this working group. What makes it an enjoyable is that we have created a great procedure of communication wherein she writes to the head of Inter Resource alliance only after we both have discussed and arrived at a decision.

  1. Joane Tiknor, Canada reached out to us for Urdu and Punjabi translations.
  2. Appreciation on Hindi and Telugu translations from Victoria on the videos of MS and low self-esteem, a resource developed by international resource group
  3. Sharing events and awareness ideas with Egypt, Mai Shawary New Chair of MSIF board, Reema and Ahmed Darwish.
  4. Taking Anthroposophy forward with Germany with Herbert
  5. Discussing alternative therapies with other countries
  6. Pedro from Canada, Dimitri from Greece she is a champion are friends on Facebook…sharing their events
  7. Have made other friends made on social media
  8. In her observation, she has also said that we need to look into the representation from India on the PwMS advisory committee.

In my 2018 report, I had mentioned that We still need to be represented in the Person with MS Advisory Group.

In my 2017 report, I had mentioned that the group discussed the Principles to Improve the Quality of Life, the importance of tackling societal attitudes and support for mental health were emphasised.

MS Organizations’ relations with the healthcare industry

I participated in these sessions as a member of the CEO Advisory Group where the discussions focused on relations between the healthcare industry and MS organisations. Of course, the industry is vital – we all want MS drugs to be developed, in European countries as well as in the US they provide much financial support for research which is very ethical and professionally done. However, since this is not the case in India that is something we need to think about when it comes to collaboration with the healthcare industry,

The CEOs reflected on the following in Athens: trust issues, power imbalance, or ‘micro-branded’ campaigns and websites with a lack of transparency about the companies behind them. I had mentioned that pharma and healthcare Industries work very differently in different countries and we need to know how MS societies have been successful in their partnerships with companies. MSIF will set up some working groups with industry to try to address such issues, with important input from the CEO discussions in Athens about what results we want to see.

Atlas of MS

This session was facilitated by Rachel King who is International Evidence Manager and she is working on publishing the 3rd edition of the MS Atlas. There were 3 group exercises followed by discussion and identifying challenges and possible solutions. When MSIF starts work on the MS atlas we will be informed on the methodology, timeframe. Since I am on the MS Atlas working group I will send updates as and when I get them and will also provide detailed information on what MSSI will need to do at the national as well as chapter level on a conference call with GC members and Chapter heads

MSIF is developing the next Atlas of MS, providing vital data about the number of people with MS and the support, care and treatment they can expect in different parts of the world. The CEO Advisory Group explored a new addition to the next Atlas: the survey of people with and affected by MS. In particular, participants debated the pros and cons of aiming for global coverage or of focusing on a selection of countries for this survey.

Some CEOs, particularly from organisations where recent, national surveys have been undertaken, were reluctant to burden people in their countries with another survey that might not result in change for them. Some felt that we would be able to get higher quality data if we focus on fewer countries. Others made the case that global coverage would yield vital indicative comparable data that could be used both at the global level by MSIF and by individual countries in their advocacy.

117 countries recruited. India being one of them

Patient-Reported Outcomes: Launch & Lancet

There was a presentation of the Patient-Reported outcomes project that MSIF and the Charcot Foundation launched at ECTRIMS, with the Italian MS Society as the lead agency and involvement from the Australian, Danish, German, UK, US and Swiss MS societies. The Lancet Neurology published an article about this initiative please click the link to read the article based on your interest: https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(19)30357-6/fulltext

Access to treatment

The Council, the Board, the Fundraising and Finance committees, extensively discussed proposals developed after the MSIF Board’s decision in April 2019 to explore if they should expand the MSIF-movement’s ambitions.  MSIF Board of Trustees has created a task force of the board (Viresh is a member of this task force) to create a global program to improve access to treatment for people with MS. The goal of this program is the people with MS should be diagnosed as soon as possible and promptly be offered DMT that is right for them, to minimise diseases activity, optimise their brain health and help them live their best lives.

The proposals, developed by staff with a Taskforce of board members were built on all the experience gained so far in the access work from different countries. They will step up the work to improve access to treatments and healthcare, underpinned by more capacity building. The proposal is planned to be put up for approval in April 2020 to the MSIF board. If approved the program will be implanted in around 6 countries globally. It is important that we implement the current project being funded by MSIF on ADVOCACY providing significant benefits to MSPs in India if we would like to be selected as one of the 6 countries for the new global program of MSIF

Under the global initiative of access to treatment, the application to the WHO’s Essential Medicines List (EML) was developed by experts from the medical fraternity, member organisations and PwMS. Medical expert inputs on epidemiological and clinical management are provided by Dr Kameshwar Prasad from the India perspective, he is in touch with Dr Gavin Giovanoni and many other neurologists. In fact, he was the one to bring out the fact that cheaper drugs have not been included in the EML and especially in India where MS treatment is exorbitant there needs to be access to affordable treatment

Pasting below the relevant section of the Executive summary

Medicines for multiple sclerosis: The Expert Committee recognized the public health need for effective and affordable treatments for multiple sclerosis (MS) but did not recommend the addition to the EML and EMLc of glatiramer acetate, fingolimod and ocrelizumab at this time. The Committee acknowledged the application’s approach to increase access to MS treatments by prioritizing selected treatment options. However, the Committee noted that some relevant therapeutic options for MS were not included in the application (azathioprine and natalizumab) or were not given full consideration (rituximab). The superiority of presented medicines over other therapeutic options in the outcomes considered (benefits, harms, affordability) did not clearly emerge. The Committee would, therefore, welcome a revised application which comprehensively reviews the relative roles of relevant available medicines for MS.

The Lancet has published an editorial on MSIF’s application to the WHO’s Essential Medicines List, which you can read here: https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(19)30390-4/full text.

MSIFs New Chairman Board

The Council also elected a new Board and a new Chair – Mai Sharawy (2nd from Right) from Egypt took over the reins from Weyman Johnson who retired after leading MSIF for the last eight years. Mai is very aware of the work we do in India and is extremely encouraging. Weyman Johnson & his wife are  yoga enthusiast and has expressed that he is very keen to know how the yoga project of Hyderabad does and especially said to keep him in the loop which is a big thing for us

Learnings and improving

With 90 delegates from across the world, Athens was an opportune moment to review where MSIF is with the movement’s global strategy. During the Council and Board meetings, we explored the successes and challenges of our collaborations, and ways of improving how we work effectively as an international movement.

One issue that was highlighted was the need for stronger measures for and descriptions of our progress and the differences we make. It was also agreed that discussions about the next strategy might focus on a few key areas rather than on all aspects of our mission.

It was stressed that all member organisations – small, large and from whatever region – should benefit from the networking and the efforts of the movement. We might, therefore, explore how organisations with similar needs can work in clusters, or how we can ‘match-make’ between two or more organisations.

In 2017 report I had mentioned that the Way forward was to request MSIF advocacy workshop for our Staff & Volunteers that was successfully achieved

In my 2018 report, I had shared that I was particularly impressed by the fact how progress has been made in building a stronger, broader movement through collaborations. For instance, in the Arab region through collaboration with MENACTRIMS. I shared that MSSI is collaborating with ICTRIMS for the first time as a national body with representation from all of our regions to work together with Medical fraternity, healthcare companies & government. I was being able to bring the India perspective about the challenges we face in our country with respect to lack of awareness leading to late diagnosis & lack of access to affordable treatment.

In my Rome conference report, I had shared a lot of learnings which included the following

  • We should learn from the success of Italian, Danish and Australian MS societies on how they have a strong Youth MS group, are decision-makers and board members of their own MS societies.
  • MSIF plans to conduct a global survey of MS person and MS organizations
  • MSIF is working towards publishing the 3rd edition of Atlas of MS in 2020
  • Most of the MS societies have a medical advisory board that helps in bringing a better understanding on what patient welfare societies can do to further improve the quality of life of people with MS. Information on treatments and updates on research is an area where India lacks information We have made a good beginning at ICTRIMS and Professor Comi is one of the world’s leading MS neurologists and a pioneer in the development of disease-modifying therapies in MS who we all met at ICTRIMS mentioned in his speech that doctors in India are showing interest to work with MSSI which is a very good thing.
  • Multiple Sclerosis Spain (EME) has repurposed the Quality of Life Principles by producing a visually engaging guide that accompanies each principle with a set of tips. We can definitely do this and engage with Spain to understand better how we can replicate this
  • I learnt that in 1995, the Society of Lebanese Friends of People with Multiple Sclerosis (ALSEP) was established in Zahle to provide support for people with MS in Lebanon. It relies on a small voluntary board to run its activities, including physiotherapy, providing information about MS, and organizing awareness-raising activities. They have done some great work in advocacy and demanding reduced cost for MS treatment and have managed to get it down by 75%. We also must work in full earnest on the advocacy project so that this activity can be showcased at a global platform in the coming years.
  • After attending the parallel session Online and teleservices I met Cynthia Zagieboylo (President CEO National MS society USA and Dr Timothy Coetzee (Chief Advocacy, Services and Research Officer for the National MS Society USA) to discuss potential collaboration

A lot of the learning and partnerships have worked out and next time we must raise funds and have energetic people on various committees representing India and continue the process of learning from other international MS Societies

Prepared By
Renuka Malaker (Hony National Secretary)

 

India MS Day 2019 – Delhi

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On the occasion of India MS Day the Delhi Chapter organised a massive rally of 400 bikers lead by a group of biking enthusiasts called THOR- ‘The Harmony of RIDERS’, riding 25 km across the city bearing flags and posters that talked about MS and MSSI.

The rally was flagged off by Commissioner for Disability Delhi -NCR, Mr. TD Dhariyal. The rally started from Pitampura with great enthusiasm after a briefing by THOR leaders and Bipasha Gupta regarding the objective of the ride. The 25 km ride saw a motorcycle cavalcade of 2 km, which culminated over an hour later at HUDCO Amphitheatre, Ansal Plaza with the bikers catching the eye of everyone on the street.

The roaring bikers entered the Amphitheatre to the joyful sound of Dholwalas beating their drums and the waiting crowd waving MSSI flags. All the bikers gathered and were further cheered on by MSSI members & persons with MS. As they were treated to refreshments, the program went forward with ‘Rehnuma Band’ performing rousing songs, both classics and new. This immediately brought everyone to their feet and had people dancing. All attendees were soon waving IMSD flags.

The band’s performance was followed by a short welcome speech by Ms. Bipasha Gupta, Chairperson MSSI Delhi, who greeted everyone on the occasion and thanked all the different biker groups. Dr. J. D. Mukherjee, Director and HOD Neurology at Max Hospital took to the stage and gave an enlightening talk in Hindi on MS, its symptoms and signs and the importance of early detection. Further, Ms. Renuka Malaker, National Secretary MSSI, gave a speech on MS and MSSI’s efforts at raising awareness and aiding MS persons in their fight against the disease.

These speeches were followed by the presentation of mementoes by Ms. Mridula Murgai and Ms. Bipasha Gupta to the admins of each biker group that had joined in the rally. The Harmony of Riders (T.H.O.R) group, in turn, presented a memento to MSSI as a token of appreciation in our continued effort in raising awareness about MS. All the volunteers from Shivaji College were presented with certificates of appreciation for their help through the day by Mr. Prabal Malaker, Hon. Secretary MSSI.

Gift bags and food packages were handed out to to the riders & all present. “What is MS” leaflets were also distributed to all the bikers. We called it a day at 12 noon as the bikers roared out of the Amphitheatre with smiles on their faces knowing that it had been a ride for a worthwhile cause.

MSSI Delhi is grateful to Shri HARSH BANSAL, IPS & NSS & NCC Cadets, & Volunteers from the Photography Society of Shivaji College, Delhi University.

THANK YOU – MADDY, DANG, AJIT, SANJEEV, MC ANKUSH AND NEIL FOR YOUR CONSTANT HELP AND GUIDANCE

FINALLY, WITHOUT THOR WE COULD NOT HAVE GONE AHEAD WITH THIS MASSIVE TASK. THANK YOU THOR-THE HARMONY OF RIDERS.

Gratitude to Sanofi Genzyme for their support.

World MS Day 2018 – Delhi

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1.Along with the rest of the world and seven other Chapters in India, MSSI Delhi  held a series of events in line with this year’s theme of research, giving all those who are curious about MS research an opportunity to meet people involved and learn more about progress in the field. The Multiple Sclerosis Society of India Delhi Chapter and India’s leading Research Centre & Hospital All India Institute of Medical Sciences held  an open day for people to meet experts working in MS research & treatment, including psychotherapy and counseling. It invited the public to learn about MS and how it affects different aspects of daily life.

An awareness Seminar was organised at India’s foremost Hospital & Medical Research centre All India Institute od Medical Sciences (AIIMS) A Panel discussion was held with 7 leading Neurologists  / Senior Faculty members of the Neurosciences Centre ( NSC) discussing the latest treatments in the search for cure for MS . Dr Kameshwar Prasad , Head of NSC AIIMS was hopeful of the results coming in from AIIMS own research  and corroborated with similar research in the rest of the world with regard to hematopoietic stem cell treatment (HSCT) . He is of the belief that in the near future we could expect that HSCT could well become the first line of treatment in MS.

This was attended by over 300 people which included newly diagnosed persons with MS, their families, caregivers, Doctors & members of the general public.

2. During MS Awareness Week, the MS Society of India’s Delhi Chapter engaged with people affected by MS as well as the wider public. An all day Awareness Booth came up at Delhi’s most popular Mall Select City Mall Saket for the whole day on Saturday 26 MayThis Mall sees the highest foot falls , with up to  40,000 visitors on weekends .MSSI Delhi put up an LCD screen showing short films & videos on MS. several thousand pamphlets on “what is MS” were  distributed along with other items like orange MS wrist bands, MS badges , ribbons etc with the WMSD & MSSI logos. Many persons with MS  and their families dropped in and bonded over coffee & pizza spending an exciting day in the Mall – some lucky mamas managed to get a quick free makeover at cosmetic stores while their kids got free balloons at other promotional events !

World MS Day 2018 Delhi

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New Delhi 28 May 2018: Multiple Sclerosis Society of India(MSSI) commemorated ‘World Multiple Sclerosis Day’ in New Delhi the capital city of India.

We adapted the theme of #brininguscloser at the National Level to address the gap of lack of awareness & understanding about MS, plight of Person with MS and the role MSSI plays. We were able to stress on the fact that carrying out large scale population-based epidemiological study to determine true incidence and prevalence rates of MS viz a viz disease burden is the need of the hour

Our main target audience for this event were 2 critical stakeholders Ministry of Social Justice & Empowerment and the Media. The event format was a panel discussion followed by Q & A by PR professional. The panelist were   Mr.  K. Vikram Simha Rao – Director, Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and Empowerment, Government of India Mr. T.D. Dhariyal – Commissioner for Persons with Disabilities, Government of NCT National Capital Territory of Delhi) Dr. Kameshwar Prasad Head of the Department of Neurology & Director Clinical Epidemiology Unit- All India Institute of Medical Sciences (AIIMS) Delhi and 2 of our MS Heroes Mr Rajiv Virat Wheelchair Instructor, Marathon & Tennis Champion & Mr Arun Srinivasan Graphic Designer and Artist

There seems to be a considerable shift in MS prevalence in India and this has really changed the notion of considering India as a low risk zone for MS. So much so that MS is included in the new Rights of Person with Disability RPWD Act and the ministry of Social Justice and empowerment has recommended that MS along with all other new disability be included in the Ayushman Bharat a national health protection scheme.

Ms. Renuka Malaker, National Secretary, MSSI, highlighted that as MSSI is a powerful voice of person suffering from MS in the country and if we sustain the momentum of  building awareness amongst all important stake holders only then we will be able to create the 1st MS Registry which will create a base for Research and Access to Affordable Treatment

For more information on MSSI please visit: www.mssocietyindia.org  visitwww.mssocietyindia.org/get-involved/

Annual Fundraising & Awareness Programme

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MSSI Delhi had the pleasure of holding a dance recital by Padmashri Shovana Narayanji .  The dance ballet “Mera Safar”  based on the uplifting & thought provoking poetry of Ali Sardar Jafri was presented by  Shovana Narayan & her Asavari  Foundation .

This was attended by our donors & supporters and MS patients who were charmed by the wonderful new Banquet space at The LaLit – the Terrace Plaza .

The programme started with a vote of thanks to all our Donors & supporters of 2017-2018 .

Programme highlights  included straight from the heart inspirational personal stories by 3 of our “MS Power Girls”. Praveen Khetarpal, Shalini Monga & Sohini Banerjee . They spoke about their journey with MS, how with support of their families & partners they were able to carry on with life. They also talked about the role of MSSI in “ bringing us closer” and making sure that they remain in the mainstream of life.

The evening concluded with Muzikafe  playing popular numbers for all present .. The rousing “ I will survive.. “ received 2 encores ! And of course the ever popular Lucky Draw  for all Donor Pass holders & MS Persons.

We remain indebted to Mrs Jyotsna Suri , CMD of Lalit Group and the wonderful Hotel team headed by Vivek Shukla for a superbly organized function .

World MS Day 2017 – Delhi

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World MS Day is a global event World MS Day is officially marked on the last Wednesday of May of the current year. Events and campaigns take place throughout the month of May under the guidance of MULTIPLE SCLEROSIS INTERNATIONAL FEDERATION, MSIF all over the world i.e.in 78 countries. This helps to bring the global MS community together to share their stories, raise awareness and campaign with and for everyone affected by Multiple Sclerosis, MS. Together we reach out to hundreds of thousands of people around the world, with a campaign focusing on a different theme each year.

To commemorate World MS Day, this year the most prestigious Hospital and Research Centre AIIMS, New Delhi in collaboration with MULTIPLE SCLEROSIS SOCIETY OF INDIA DELHI organized a PRESS CONFERENCE at their new Convergence Block, Media Room and a medical panel discussion & information on the latest treatment AHSCT for MS and how to lead and manage LIFE WITH MS at JAWAHARLAL NEHRU AUDITORIUM. All the MSSI Delhi MS Patients, members, volunteers and concerned people were invited. The session was open to public.

The seminar was Hosted by AIIMS and Chaired by Dr. R Guleria, Director of AIIMS. Moderator was Dr Kameshwar Prasad, HOD, Department of Neurology, AIIMS and participant panel doctors were Dr Padma Srivastava,  Dr Vinay Goyal , Dr.Rohit Bhatia,Dr Deepti Vibha ,Dr Vishnu YV, Dr Rajesh Singh and  Dr Awadh Pandit.  It was an open forum for questions from each MS patients & answered to their satisfaction.

Each Doctor was allotted different topics. The topics which were touched: – LATEST MEDICAL ADVANCES IN MS, AHSCT STEM CELL TREATMENT, BLADDER PROBLEM, WEAKNESS, WALKING DIFFICULTIES, DEPRESSION & TREATMENT, and PREGNANCY & MS & DIET COUNSELING etc. The theme was “LIVING WITH MS”. MSSI Hon. Secretary MSP PRABAL MALAKER inaugurated NEW MSSI BROCHURE FOR WMSD AND Ms.Meenakshi Bhujwala introduced the work of MSSI.

Some Doctors and MSSI members Bipasha Gupta and Meenakshi Bhujwala counseled the MSPs even after the session was over .

A PRESS CONFERENCE WAS HELD AND EXTENSIVE INTERVIEWS ON AIR FM CHANNELS AND DOORDARSHAN WERE GIVEN BY BIPASHA GUPTA,DR.VINAY GOYAL OF AIIMS AND PRABAL MALAKER PRIOR TO THE EVENT. 4 LEADING NEWS PAPERS CARRIED QUARTER PAGE PUBLIC NOTICES FOR THIS MULTIPLE SCLEROSIS  SEMINAR ON THEIR FRONT PAGE.

A large gathering took place in spite of the very hot weather. 30 new patients were identified & enrolled during the Seminar. The Seminar was very interesting and gave all the opportunity to learn many new issues in regards to health safety for MS patients. The question answer session was very good and solved many queries- this was greatly appreciated by all present. It was a very enriching experience for all MSPs & caregivers who attended the seminar. 9 Doctors of AIIMS, many MSPs with their caregivers, 5 physiotherapists, EC members, volunteers & Office Staff attended this enlightening & stimulating seminar. MSSI is grateful to all their members and volunteers for contributing their valuable time .

FOOD PACKETS, MEDICINES, WATER BOTTLES, JUICE AND MSSI BROCHURES WERE DISTRIBUTED TO ALL THE MSPS AND CAREGIVERS.

MSSI DELHI DONATED A WHEEL CHAIR AND DIAPERS ON THE DAY TO HELP MSPS.

WE ARE OBLIGED TO TATA POWER DDL FOR PROVIDING CARS FOR OUR HOME BOUND NEEDY PATIENTS.